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Saturday, September 25, 2010

Gabriella's stroke, one year later

Preparing for this blog... I read back into my own blog entries from the days of Gabriella's stroke. I am sitting her crying tears of grief as I re-watch what she went through the morning of September 25, 2009. I'm not sure what I want to even say about that day.

I posted a prayer that night that kills me to read again. This poor mother, her poor child, what if they lost her? She was already going through so much with her pending heart transplant. My heart breaks for them. Oh, wait, that was us....

I am not reading back because I don't remember. Over the last year I retained what I needed to, the details and stats, and I pushed forward with finding her help to retrieve the skills she lost. I think the reason that I get so horribly emotional reading back to those days is because I detached myself from the pure agony I felt as a mother watching what she went through, because it was haunting me so terribly. She almost coded. We almost lost her. Post traumatic stress disorder at its maximum. My way of coping with the PTSD was to keep facing the steps in front of me so I would not have to keep facing the emotional agony of what happened, no matter how hard it was to accept what happened to her. It doesn't surprise me that I dealt that way.... I lost my dad at 13 and my re-dad at 21... and both times I did the same. I was haunted by the stress and emotion of it, so I focused forward and how to help my mom get through everything. I didn't take time to sit in the moment... it hurt too much. Of course, I am not saying this was the best route to manage... but it did keep Gabriella focused on recovery as well. Regardless, the pain was deep.....

Gabriella has spent 365 working hard. I wondered when she was still in the hospital weeks after her stroke where she would be in one year. I honestly had no expectations, no preconceived idea, nothing. I remember her eyes with a trapped look, her 'lazy arm' she couldn't move, her grunts and screams when she wasn't understood. This experience started a new form of understanding between Gabriella and I. Our relationship changed. Before her stroke she was very strong and independent and didn't even trust me to remove a band aid, much of it came after I had PJ and she had to share me. I even got a mothers day card from Paul that May and it said something about hoping Gabriella and I become closer. I loved her with all my heart, she was my baby and made me a mother. Our relationship just had a dynamic of independence. After stroke, I was there to read her next 5 thoughts to help lessen her stress... which was not easy for her to be dependent. I was thrown into the position of being her constant nurse, installing ports and giving injections in them into her belly, explaining procedures and being by her side for every one of them, keeping her doctors all on the same page after a crash course in medical training.... and she trusted me 100%. Gabriella and I have spent the last year planting roots of a relationship that will be unlike any other as we both grow older... and I feel blessed by that.

Never would have I thought it was possible for someone to get back as much as she has in just one year. From not being able to swallow or move her tongue and having only conversations through me as her translator, to having a (while not YET grammatically correct) conversation with anyone she wished to speak to in just ONE year.... THAT'S miraculous. She didn't have the luxury of being able to write or read to communicate... yet God built bridges for her to be heard.

Gabriella has overcome the odds in this past year. Her Neurologist told me a couple months out that she was at the max potential for her arm function at about 30-40% use.... and now today, with about 75% use, she proves him wrong. We were told she had a strong probability of cognitive problems, yet she tested a whole year ahead of herself this past January. We were told she would most likely have an issue retrieving words, and she did suffer from that as her words came in larger amounts, but her new sparkly heart has allowed her brain to function at a higher level and retrieving the words she wants to say is so minor it is hardly noticeable.

Not only did she overcome this life changing stroke.... look what she has achieved through her heart journey. Gabriella's story is something amazing, and though I always get flustered when people mention it, the more I think about everything she has been through and the more I read my old entries, maybe a book isn't that bad of an idea.

So now on this 1 year mark of her life changing stroke, and on the day we return home from her heart transplant, God has answered the cries of our hearts. He loves, protects and heals... both here and in heaven. His reasonings for allowing things like strokes and transplants or even taking little ones to heaven are unknown, but we continue to praise God in this storm!

About Me

Gabriella was diagnosed in April 2009 with a severe and irreparable congenital heart defect, Hypertrophic Cardiomyopathy. On September 25 2009, just before being listed for her new heart, she suffered a left MCA stroke, impairing her right arm abilities and taking away her speech. She was finally listed and received her heart after 97 days of waiting on May 17, 2010. Gabriellasheart.com has transitioned from a diary of our simple life to a log of Gabriella's status, and proves what a warrior she is.